LUPUS IS LIVING WITH ME & I'M LIVING LIFE!!
Take a journey into my universe.
Partake in the unveiling of my deepest, darkest and intimate realities.
Experience my struggles with life and my battle against lupus.
Explore with me in my quest to discover happiness in my own utopia.

Last night I gave into temptation, I fought hard, but not hard enough because I lost and had a slice of red velvet cake, with frosting, two scoops of cherry vanilla ice cream and whip cream. Horrible, right? I got up this morning at 6 am so I could take my medication 2 hours before breakfast so I can take the rest of my medication. I made a triple decker raisin bread sandwich with provolone cheese, American cheese and Genoa salami. I said I'll eat right for the rest of the day.

I went to the family doctor I choose and he is fantastic. He has a very charming personality, I was comfortable as soon as he walked into the examining room and says, "Who are you? I don't know you yet?" I smiled from ear to ear, in return to his smile. He asked about my medications, my diagnosis, then my history. I gave him copies of my medical records and he says, that's fine but he will do his own test. He checked my hearing, I don't hear too well out my right ear. (That ear was damaged in 1997 when I had an sinus infection. I'll tell this story when I get back to Mr. 23 years.) He did examined me from head to toe. I've been examined, they listen to my lungs, check my mouth, but this doc checked everything. He had the nurse draw blood, do an EKG, and a PFT, that a pulmonary function test. He of course says I need to lose weight and wants me to consider lap band. I would do it, but there are 2 things stopping that. 1One the insurance doesn't cover it, second I read somewhere you can't have it if you have lupus, or on steroids.

I left the doctors' office, Access-A-Ride was nice and early, I asked the driver to drop me off at Walgreen's to get my refills and to put in my script for Cipro, I have a UTI. (Figure it out. I get them all the time. Somethings are just personal.) I picked up two bags of chips, some of those m&m with pretzels, and a bag of my favorite Hersey Bliss white chocolate, only one bag. I sat to wait for my medication and read the paper. I was considering walking, but I needed to use the bathroom and exhausted myself doing going in the little bathroom in the store, so I walked the half block to the bus stop, was short a dime, driver let me go. I walked the half block to the house. I was in a real up beat and good mood.

I checked my e-mail and FB account. The SLE Lupus Foundation posted the video from the hospital tour. I was excited that they used my fat ass in the footage. I emailed to everyone and posted it on my blog. One sweet person told me I was beautiful. Too kind of her. But look at myself, sitting forward, I MUST LOSE WEIGHT!!There are no if's, ands' or buts'. If that woman who was on Rachel Rays, was over weight her whole life can lose 215 pounds in 15 months I can too.

My mate made broccoli and lamb chops. That's all I was going to eat. But I had to eat the rice and peas, and Candie yams that were left over. You don't waste food here. I had no choice. My mate, man, she is something. I told her that the doctor wants me to get the lab band and she says, you can't do that you eat too much. The doc explained that they prepare you psychologically, they monitor you and train you to eat the proper foods. But I don't know what I'm talking about because one of her friends had it done. So of course she doesn't want to hear what I have to say. Just like she tells me I'm lazy, because all the people she knew that has lupus didn't complain about being tired. I don't know shit, it's only when someone else says what I say that she believes me. Like when her sister was here, her sister asked how she made her bar-b-que wings. Her sister said, so after you broil them you marinate them in the oven. I said yes, my mate nearly took my head off saying, 'I did not!' When she explained to her sister that she bakes them in the oven her sister says, yea marinate. Did she say she was sorry for yelling at me and making me feel like shit. Nope! Well I don't plan on eating anything else tonight.

My HS friend is sending me some money. I really can use that. My oldest friend from church is picking me up tomorrow to go to the movies. Can you believe I'm going out somewhere other then a doctors appointment, seminar, nor to see the grand kids or to a funeral/wake.

Oh I was happy. Too damn happy, it's like I'm not suppose to be happy long. I sent the information to The SLE Lupus Foundation yesterday, as the program director suggested to see if they would give me the money for the ad I made by mistake on facebook. I was denied. I was looking forward to that money to help me with the Oxygym. I won't be able to afford that now. I would never had asked for money, the program director made me feel like it would happen. I hate feeling like a fool and that's how I feel. This is why I don't ask for hand outs. No one gives me a damn thing. I don't win raffles, door prizes, lotteries. I'm one of those people if it wasn't for bad luck I wouldn't have any luck at all. Anyway I was gracious and told her I knew I would I wouldn't get it and thanked her for trying to help. I hurried off the phone to weep. So that's the way my days developed and now it's time for me to read my nook and try to get over the disappointment.

When I write again I want to write about God not making mistakes. I want to know what my purpose is. My whole life has been one mistake after another. I want to know what my contribution to mankind is or will be. I remember the principle of the HS I graduated from said in his speech, to our graduating class if I touch one person I did my job. There are people reading this blog who say I've touched them and that my blog is an inspiration. I just don't see it. Maybe I said enough on this subject, I don't need to write more in my next blog. I am not whining, just reflecting. Sad about not getting the grant, but tomorrow I will have a good day.

It was a chilly morning Tuesday, even chiller at 5:44 am when Access-A-Ride arrived to take me and my mate to North Shore Hospital in Manhasset. I was ready for this test but like all surgical procedures there are risk, knowing this causes fear and anxiety to develop.

We reached our transfer point by 6:30am and waited inside LIJ until 7am. The next bus was on time and we were at the hospital at 7:30 am. I was not due until 10 am. But given the history of dealing with AAR and Able I scheduled my appointment time to 9 am. So we were there much too early. The doctor was working on the cardiology floor and wouldn't be down until 12 pm.

The doctor arrived around 12 and I was in the procedure room shortly after. I was not put to sleep. They took tape and pulled my belly up so the doc would have easy access to my groin. They stuck a tube in my groin and led it to my heart. It hurt and I was given several shots of pain killers. The arteries in my heart look good the doc says. I don't have any cholesterol problems so there are no blockages. I do however have the pulmonary hypertension, no surprise there. My pressures are in the 50's he said. My echo pressure is 38 this is why the my cardio doctor told me I probably don't have PH. The normal pressure I found out is 30. So they caught it at the beginning stages. WooHoo! So now I have to wait until next Wednesday to see the Cardio doctor and until November 16 to see the pulmonary doctor. I see a medical doctor tomorrow, new doctor. The Rheumy, Pulmonary and Cardio suggest I have a medical doc. Monday is my appointment with the Rheumy and I meet one of the doctors who was on the hospital tour.

Yesterday I was sore and tired. I was instructed to take it easy, no lifting, no walking up and down stairs. I went upstairs to eat breakfast. After breakfast I came back down stairs, got in bed and stayed there all day. I did get up to make my cousin a birthday card that I hope to mail tonight or tomorrow, it's late and I feel real bad that I didn't mail it on time. I ate potato chips and candy because I didn't want to walk up those stairs again. Today I can take a shower, thank goodness. I had to use a bed pain after the procedure because they didn't want me to move my leg or get out the bed. I made a mess. I washed my ass, okay but ain't nothing like getting in the shower and getting every nook and cranny especially when you're over 300 pounds.

While I was waiting for the doctor they had Rachel Ray on and she had this woman that weighed almost 400 pounds. She lost 215 pounds in 15 months! Imagine! She said she didn't eat more then what fit in the palm of her hand. It's determination and will power. I'm going to do it. the food from Saturdays' dinner is just about all gone, so I have no more excuses. I'm going to have my cantaloupe juice this morning and cereal. I think I'll make some tuna and there's stuff to make a salad. If I can handle eating nothing but potato chips and candy I can handle just tuna and salad.

Next week I go to the Oxygym for real and that with watching my diet should help. It's cool enough to go walking in the morning.

I'm in a melancholy mood. I'm just living and trying to keep living. But if I don't I'm okay with that too. Sometimes I get these feelings that no one will miss me if I wasn't around and that's the feeling I feel today. I'm not depressed or sad. I don't feel self pity, just lonely. Maybe it's the rain or being with a mate who is into herself and I'm just a stuff doll she plays with when she's bored. I felt so bad when she was with me on Tuesday, she kept sucking her teeth and trying to rush them to let me leave. I had to recover for 4 hours they wouldn't discharge me until 4:40pm. We had to change our Able and AAR arrangements. We got back to our neighborhood about 7pm and we voted! We were going to walk home but the bus came. I apologized to my mate and thanked her. She said I didn't have to, but action speaks louder then words and she was clearly annoyed while sitting in the hospital.

You know when I was with Mr. 23 years I felt lonely and that's because he was always gone. We, however were a couple. We were one in our relationship. In this relationship, it's me and it's her. We are not one and that's what I miss, not having someone who has my back. I need a rent receipt and she doesn't feel like writing it. But she reminds me to pay my rent. If I need money to pay for meds, appointment or care fare, she complains when I ask her for help. I need the receipt to show proof of rent, so I can possible get the money back from that stupid FB ad I did by mistake.

As in all my relationships I give unconditionally, I've given her all kinds of gifts and I lend her money when I had it and she never pays back and I never ask. Yet I hate to ask her for anything. That is a problem in a relationship, isn't it?

Forget that bull shit I am blessed. I may be a little chronically ill but I'm able to make a life of sorts. I refuse to let this sadness get the better of me. It's raining but I'm going to find some sunshine in my day. I love myself and that's the only person I need to have my back.

Okay the people are all gone and the frig is full of food. Starch, mac & cheese, rice & peas, candie yams, stuffing, ham. Two pies, a pound cake and some red velvet cake. It will be a few days before we finish it up. When it's gone I will start this weight lost regiment. I am determined.

Tomorrow I go for the heart cauterization. My mate is going with me, we are being picked up at 5:46 am. And the return pick up to home is at 4 pm. I hope that I feel well enough to vote when we get back in the neighbor hood.

The dinner was Saturday. My mated family all showed up. As mention above the food was all good. My oldest daughter showed up with her two children, my youngest daughter wouldn't come without her man so my other grandson wasn't there. My mate told me to tell her not to bring her man. Other then that there was no drama.

My mates nephews' wife has pancaristitist, talking about there always being someone worst off then you. She was in the hospital several times over the year and she still needs another surgery. She has to watch what she eats very carefully and avoid all stress. Again I realize how bless I am listening to her health woes. My complaints are nothing, really.

The first photo is my right leg when the rash just started getting bad.

The second photo is my left leg as it is today, you can see the scars. I used 'Palmers coco butter with vitamin E, the stiff one in the jar to fade the scaring.

The last picture is my right ankle as it looks today. My ankles broke out when I got sick in 2008. I didn't care about the scaring.

I had this rash on my leg before I left the projects and moved into the house. I was using creams I got from the doctors and nothing was working. I always thought I had lupus but didn't know this was rash lupus. I only knew that I was affected by the sun, the only symptom I knew. I recognized what my leg looks like now from the pictures of discoid lupus. This is the only picture I have of my leg, it was over 17 years ago. Both legs had the rash in the same area.

My home attendants told me that someone had put voodoo on me and had their family in Hatti, sending me all kinds of things to use on it. I started rubbing it with leaves of Aloe Vera plants, and what that did was to cause pus to ooze out of them. I finally went to a doctor after I moved into my mothers' house. I went to see my mothers' same doctor. He sent me to the dermatologist. He was the one who diagnosed me with a false positive syphilis. He saw two symptoms of lupus in me. He knew my mother had lupus, but he still didn't have a clue.

After the dermatologist tried different creams on me with no positive results she said she was going to do a biopsy but first she told me to try one more cream. This one worked, it has steroids in it, so of course the rash began to go away. She told me I had dermatitis.

Doctors really need to be more aware of lupus. I was about 34 then, I could of been monitored if one of the professionals had recognized lupus. Actually I had three symptoms, I was allergic to sulfa. There's no telling if I would of stopped smoking, drinking and drugging but at least I would of known and the doctors would of known and could have treated me accordingly. As I continue to tell my story I will tell the different symptoms I had.

Mr. 23 years took care of me, he would cook, clean and wash clothes. He would let me sleep all day. Or let me lay down when I came in from work. On Saturdays I would give the house a thorough cleaning. Every room, kitchen, dinning room, living room, bathroom and my bed room. I would cook a big dinner on Sunday and shut down on Sunday night. I would push myself to go to work all week and at night would be too tired to do anything else. We ate a lot of take out.

This just a glimpse. Details will follow in the days to come. I'm tired I stayed in bed all day. I have my test tomorrow, I need to get something to eat then, shower and get some rest. I have an appointment on Thursday and I'm thinking about going to Brooklyn to make posters for the Lupus walk on Sunday and on Monday I go to see the Rhuemotlogist. I will try to do some posting in between.

My 2Cents Not Worth A Penny

me

About Me

We live in a world full of certifiable, psychotic and derange crazies who are all on the verge of madness. Everyone is insane except me. I am sharing my rational, balanced and lucid knowledge in an attempt to save the world of total confinement in insanity.
But this is just my 2Cents and it's not worth a penny.

An Orphan’s Hope

Defecting from today’s sadness,
with hope of realizing tomorrow’s happiness.

Polluted dreams,
diluted realities.

Childhood fantasies,
adult terror.

Confined in a vacuum of isolation,
choking on ignored emotions.

An orphan quietly dying,
from an trivial life.

10/5/08

Highway to Success

Highway to Success

On my journey of life,
I took the path to the left,
off the express highway of success.
I trotted along melting tar,
through dusty dirty roads.
Over stony trails.

There were ditches in the darkness,
in some places.
A few times I fell flat on my face,
I’d get up,
wipe the blood from my nose and keep on going.
Blinded by the sun setting in the west,
As I traveled toward the fangs,
leading to the belly of the beast.
I’d trip on stones,
fall on my ass,
rise to my feet,
rub the tenderness and keep marching ahead.

There were signs posted pointing to detours,
I easily ignored.
There were alleys I could sneak down,
but on my course I stayed.
A map was folded in my pocket,
I never checked my directions.

It was an exciting journey of life.
Climbing up hills, rolling down.
Climbing back up and rolling back down.
Seems this last time,
I’ve been going down quite a while now.

Don’t see no detours,
no more alleys to sneak down.
My map was lost a ways back.
Long ago I was on the express highway of success.
I tried hitchhiking on the big rigs of lotto,
The numbers on the license plates just passed me by.

I’ll never get back onto the express highway of success.
I have to follow this path,
forward I go,
straight ahead.
On this bumpy path I choose.

Back when I began this journey of life.
While traveling on that express highway of success,
I woulda’, coulda’, shoulda’
took a right instead of a left.

I didn’t ask for directions.
I didn’t listen when directions were offered.
I ignored the detours.
I passed the alleys.
I lost my map.

I knew where I was going.

Somewhere on this path I lost my dreams,
and found a brick wall.
Now I know, I took a dead end road to failure.

I’m looking for my map.
Hoping to see one of those alleys.
Searching for those detour signs.
And asking for directions
back to the express highway of success.

I didn’t know how to refuse.
I cheated addiction,
I cheated HIV,
I cheated homelessness.

But I couldn’t cheat fate.

Gods’ vengeance prevails
just sucked the air right from my lungs,
presented me with the gift of emphysema,
maybe,
maybe if I partied in moderation,
No, No!!
that’s just stinking thinking.

I batted my bedroom eyes,
and flirted with the devil,
I wasn’t too shy to dance,

I must pay the price,
I crave oxygen,
And sleep, oh blessed sleep.

I partied hard,
I had fun,
now it’s time to pay,
an autoimmune disease is fighting me,

and Lucifer is still tempting me.

While God watches my
freedom of choice.
9/27/08

Glass Lady (what life was living with a crack head)

I can no longer compete,
with your lady in the glass.
She's your greatest love,
she means more to you,
then me or your children.

She's your princess,
your shining star.

You'll stay up all night for her.
You'll spend every penny on her.
I'm jealous, I can't compete.
I can't send blood rushing,
through your veins,
nor can I keep your heart pumping
at such a terrific pace.

No,
I can't keep your attention,
as long as you can hold her sweetness in your lungs.

I am only a woman,
a sad, lonely woman,
with no joy,
no happiness in me.

I can offer you my tears of hurt.
To me you lie, to her you give everything.

Me you abuse,
her you worship.

Your family you allow to struggle,
to her pimp you give more than enough.

You tell me not to worry,
everything's gonna be taken care of.

This I believe,
because in time I'll be able to take care of me,
then your mistress can give you

one

final

HEART ATTACK!!!!!!!!!!

Fate Be Told By: K. Wilhelmina Floria 6/9/09

Weeping sorrows,
full of illusions and dissatisfaction.
Stimulating anxiety,
a designer disorder,
yearning sedation,
requiring rehab.
Seeking amends
for a life
unfixable.
Really too tired to care.
Hiding,
deep in the shadows.
Invisibly trying to be seen.
Now.
Was it fate
that gave me this day?
Or,
was it the life I lived
that became my fate?
Once I tried to steal joy,
sure that happiness would follow.
So said,
that time is gone.
Today,
fires of hell are trying to engulf me.
Blinding my eyes
With oozing tears of strength.
Eliminating the dark flames of hell,
to a path where heaven shines,
and warm my cold heart.